August 31

We met a woman who suffers from epilepsy in a former internally displaced persons camp in Northern Uganda. Through a translator she told us that she cannot go near pregnant women or children. The community fears that her condition is catching. They don't know who might be afflicted next. Some of this fear is genuine, some of it is plainly abusive.

The stigma facing women with disabilities manifests as rape, abuse, neglect, and public ridicule. This combined with poverty, low levels of education, and an HIV epidemic produce scary results. Many disabled children are hidden away by their own families, denied socialization, education, and basic care. Many women with disabilities struggle to take ownership of their own sexual and reproductive health. The human rights of people with disabilities are unfulfilled. The invisibility of this population prevents fundamental change.

Despite these very real challenges, women with disabilities are not devoid of agency. Most of the women we spoke to showed incredible strength in the face of very real adversity.

"Tell us about women with disabilities in your community who are successful," we asked.

Some responses were tentative... a farmer who made a decent living, a member of parliament in a far off land. But some were more concrete... a woman with a successful business selling food, a teacher in a nearby school.

"How did these people attain their success?"

They were given support. They were loved by their families. They risked everything to attend school. They were given a scholarship. They benefited from an NGO project.

The organization I work for is working at the grassroots and national levels for the betterment of women and girls with disabilities in Uganda. They envision a society where the rights of women and girls with disabilities are respected, where girls with disabilities have equal access to education, where the sexual and reproductive health rights of women with disabilities are understood. This organization envisions a world where people with disabilities can live as autonomous members of communities that include, support, and value them as individuals.

To this end, the organization is creating awareness and influencing policy for the direct benefit of people with disabilities in Uganda. They are helping groups of women with disabilities in their villages attain basic human rights. They are transforming the lives of women with disabilities through training, education, health care, and access to law enforcement. They are working toward systemic change, while not ignoring the immediate needs of the population they seek to uplift and empower.

This is a strategy that I greatly admire and strive to achieve in my own life's work.

The last woman we interviewed told us that people with disabilities are being left behind in development. The truth of her words are ringing in my ears.

snapshots from the field

I have spent the past two weeks in the field. The first week we were giving a refresher training for the village paralegals/disability and health advocates. The village paralegals are an amazing group of women who have taken on the responsibility of seeking out disabled women in their communities, educating them about reproductive health, and helping them navigate complex systems of law enforcement and health care. They also act as enumerators for the sexual and reproductive health research.

I spent the second week training research assistants and carrying out qualitative interviews to find out more about the lives of disabled women in various rural sub-counties of northern Uganda. We also interviewed small-scale DPO's (disabled people's organizations) to find out more about their work at the grassroots level. The goal of this baseline research is to get a better understanding of the issues facing disabled women (men and children, too) deep within the villages. I haven't done the analysis yet but from a preliminary overview it looks like sexual and reproductive health issues/HIV and general community stigmatization (hugely impacting education and health care access) are major issues.

Conclusion: Field work is exhausting, but rewarding!

training village paralegals on the legal avenues for rape and defilement cases

(crimes against morality)

Me with some of the Kamuli and Mpigi team on Lake Kyoga

The team getting ready to leave Kamuli district

What interviews in the field look like;

We are in a former IDP camp in Lira district.

This cow was intruding on my interview space.

He clearly wanted to be interviewed by me (probably for the transport refund and free soda!),

but unfortunately my translator didn't speak his dialect...

ten weeks old

I don't know what will happen if I let myself ask the questions that lurk beneath the surface: What roles do I play in oppression? How do I benefit from global inequities? Why can't I do more (what aren't I doing more)? What is my responsibility to individuals? to populations? Is my very being here in Uganda and my chosen career in public health part of a broken system that depends on inequality? Is my deference to structural inequities a copout? And why do I have no reaction at all to many of the injustices I see on a daily basis? There are no answers really, only more questions.

It's hard to describe the day to day experiences here. Although I love Uganda, love my work (most days), and do not wish to be anywhere else, there are a lot of times when I feel wholly disconnected, unmoved, and stagnant. Confronted with poverty, desperation, and injustice, I am surprised and ashamed at how little I feel at all. I am a witness to a lot of things that before I only suspected might exist. Seeing these things as a reality has left me numb. My reactions are intellectual, sociological, philosophical, and routed in development theory, but not fundamentally human.

I am left with an overall feeling of powerlessness, discontentment, and fear, followed quickly by shame. I should care about individuals, be moved by their plights, and excited to make a difference, even if it's just a small difference. Instead I am left with one looming, disempowering thought: Helping people is not enough. Nothing I can do will ever be enough; and one startling, insurmountable challenge: I don't want to help people, I want to change the world.

field work

For the second week in a row, I am in the field. I am surprised by how difficult it is for me to be away from the comfort of Kampala, a place I now consider home. Field work is both exhilarating and exhausting in equal parts.

While last week in Kamuli district I could only consider myself a participant observer in the field, this week, in Lira, I am a leader. Today I trained our research assistants, translator, and interpreter and tomorrow we commence the baseline survey. I wrote the field guide, crafted the protocol, and will eventually lead a team in analyzing the data we collect this week. I feel empowered, but also heavily responsible for the quality of the data we collect.

On Friday my coworker thanked me for writing the research assistant training manual. He told me that I made his job easy. I left work smiling. Today another coworker told me that my training went smoothly and I felt accepted. This evening I skipped dinner because of exhaustion and an inability or lack of desire to socialize. My coworker just knocked on my door; she bought me juice and apples. For the first time, I felt connected and cared for. Work-life is starting to feel comfortable. As the matatu/taxi says, "patiency pays."

I am happy to be out of the office this week, get my hands dirty in qualitative research, and reflect on where I am and what I am doing. As we drove north today (on the same route I would take to Pader), I felt tense and anxious. Northern Uganda represents my personal failure. Perhaps this week, in a small way, I can redeem myself.

Kampala in 5 senses

Taste

Kampala tastes like three varieties of bananas, two varieties of mangos, eggs with white yolks, and tomatoes that taste like tomatoes should taste. Kampala tastes like chewy chapatti and kabalagala (Uganda’s banana pancake).

Kampala tastes like passion fruit juice made from actual passion fruits and perfectly ripe avocados pulled from the tree at my office. Kampala tastes alive.

Kampala rarely tastes as bland as its staple foods: Posho, matooke, cassava, rice, and purple yams. Even the concept of a meal is different. Food is your starch of choice and is always served with sauce (meat, fish, beans, peas, or g-nuts).

Kampala tastes like jack fruit: an insurmountable challenge until you know how to navigate it, know where to cut so things turn out just so, precariously avoiding a sticky mess and endless frustration.

Smell

Kampala smells like smoke from burning garbage, gasoline and car emissions, livestock. Kampala smells like fancy perfumes at garden city mall.

Kampala smells like fried food, cooked to order on the street.

Hear

Kampala sounds like taxis honking, birds crying, boda-boda drivers saying: “Muzungu, where are you going?” and churches loud and reverent. Kampala sounds like the Muslim call to prayer and goats that talk like children.

Kampala sounds polite: how are you? I am fine. Kampala sounds like Sebo (sir), Nyabo (ma’am), webale (thank you), wanji (yes please?).

Kampala sounds like rhetorical questions and conductors shouting routes: kampala, wandagaya, kampala, wandagaya.

See

Kampala looks like juxtaposition. Slums next to giant houses on magnificent hills, modern malls with cinemas give way to street children and unimaginable poverty. Sky high unemployment rates being managed by MP’s with salaries equally sky high. Kampala looks like a clash of conservative cultural and religious beliefs with modern realities. Dirt roads and paved roads intermittent, livestock being transported by motorcycles. Kampala looks like an identity crisis. But, as is often the case, there is beauty in the breakdown.

Touch

I am choosing to interpret this sense as the visceral feel instead of the tactile touch. Kampala feels like… texture. Kampala feels like frustration. It feels raw, untamed, but out of chaos there is, against all odds, order. Kampala feels familiar like home, but unconquered like adventure.

pursuing global justice

Living in a country with extreme poverty means that I am confronted with need on a daily basis. I am ever cognizant of my privileged, resourced status. Lest I forget, a quick walk outside reminds me immediately.

Walking through town, I feel determined and purposeful. My eyes gaze just above the poor woman with her child, hand outstretched trying to get my attention. I keep walking, as if I don't even see her. And part of me really doesn't see her at all.

A friend takes me aside because she needs to talk. She tells me of her desire to go to America and, more immediately, her need for school supplies. I stare at her, dumbfounded, part of me feeling betrayed, another part of me unsurprised. I find myself hoping she will still be my friend when I tell her I can't help. I don't even consider the alternative.

I justify my behavior because I believe that the issues I am witnessing are structural and cannot be remedied by money or offering personal connections. And, though I truly believe this, I am terrified that it has left me callous towards the needs of others. It certainly wasn't always this way. Witnessing poverty and homelessness used to overwhelm me and make me cry. Somehow, I now see it as just another marker of global inequity.

Paul Farmer, a man I respect but do not always agree with, goes by a model that you should help the poor no matter what. A man who is hungry does not care whether his hunger is a systematic issue that can only be solved through massive structural changes; he cares about eating. A girl who cannot pay school fees does not care whether the system of charging school fees is unjust; she cares about going to school. But, there are other reasons I don't consider giving at the individual level. I don't want to encourage dependence and I certainly don't want to be a part of an unfair power dynamic. Part of me sees the enormity and complexity of global poverty and knows that any contribution I could make would make no difference at all.

But, there must be a balance--something between handing out money to individuals and deferring to my supposed powerlessness over global poverty. The mezzo level of poverty alleviation, so to speak. Somewhere between direct structural influence and handing out food to the hungry sit small NGOs and other organizations that seek to alleviate the manifests of poverty through social change. These NGOs see the needs of those around them and respond in kind, positioned perfectly to influence both the individuals and the structures retaining them.

I don't feel that my work in Uganda at a small NGO replaces my personal obligation to alleviate suffering. I still have a steadfast belief in the need for structural changes, reforms, and policies that create conditions of social, economic, and educational inclusion and opportunities for all people. I still believe that without looking at systemic causes of poverty, handouts do little but enforce paternalism. And I still don't have a comfortable way of responding to the need I am confronted with on a daily basis. But perhaps comfort should not be the goal. Perhaps I should endeavor to see people more clearly, work hard at the task at hand, advocate for the structural changes I so strongly believe in, and use my power and privilege in pursuit of global justice.